Glossary 2016-11-07T21:10:01+00:00

GLOSSARY

340B Pharmacy Program

  • A program that requires drug manufacturers to provide outpatient drugs to eligible health care organizations at a discounted rate, enabling those organizations to stretch their federal resources, provide more services, and lowers medication costs for patients.

A-B-C

Carrier

  • a person who has the gene for a condition, but does not necessarily display the symptoms.

Clotting factors

  • proteins in the blood that stop bleeding, and form a clot.

Coagulation

  • the process of forming a blood clot.

D-E-F

Factor product

  • a genetically engineered product made without human blood products; infused as a treatment to replace the body’s missing clotting proteins; absence of human blood products reduces the risk of transmission of blood-borne infections.

G-H-I

Hematologist

  • a physician specializing in disorders of the blood.

Hemoglobin

  • the protein in red blood cells that contains iron and carries oxygen and carbon dioxide.

Hemophilia

  • an inherited blood disorder passed from a parent to their child through genes that delays the clotting of the blood causing difficulty in controlling bleeding even after minor injuries due to lack of clotting factor protein in the blood; can lead to chronic health problems such as joint disease over time.

Hemophilia A

  • a form of hemophilia with deficiency or absence of blood clotting factor VIII. The most common form of hemophilia, also called “classic hemophilia.”

Hemophilia B

  • a form of hemophilia with deficiency or absence of factor IX. Also called “Christmas disease” after the first family diagnosed with the condition.

Hemophilia C

  • a form of hemophilia where patients are deficient in or lack factor XI protein; also called factor XI deficiency.

Infusion

  • delivering clotting factor concentrate directly into a vein.

Inherited

  • when certain characteristics, conditions, or diseases are passed from parents to children through genes.

Inhibitor

  • an antibody to infused clotting factor concentrates, making standard treatments ineffective.

Inherited blood disorders

  • several chronic health conditions in which blood does not clot properly, resulting in excessive or lengthy bleeding.

J-K-L

M-N-O

Mild hemophilia

  • a form of hemophilia where a factor VIII or IX level ranging from 5% up to 50% of normal blood levels is present.

Moderate hemophilia

  • a form of hemophilia a factor VIII or IX level ranging from 1% up to 5% of normal blood levels is present.

P-Q-R

Physical Therapist

  • specialists in activity, exercise, and rehabilitation, all essential for the care of joint damage caused sometimes by inherited blood disorders.

Plasma

  • yellow-colored, protein-rich portion of the blood, which carries the red blood cells, white blood cells and platelets.

Platelets

  • tiny plate-like components of blood that help seal injured blood vessels and stop bleeding.

S-T-U

Sickle Cell Disease

  • an inherited blood disorder whereby abnormal hemoglobin within the red blood cells causes the cells to become rigid, sticky, and shaped like a sickle; the sickling shape makes the blood cells fragile, impeding blood flow which over time can cause severe pain, and harm organs, muscles, and bones.

Synovitis

  • inflammation of the synovial membrane, which surrounds joints; can be caused by repeat bleeding into the same joint.

Target joint

  • a joint that has had repeated bleeds, or at least four bleeds within a six-month period.

Thalassemia

  • a blood disorder passed from a parent to a child through genes that causes the body to make fewer healthy red blood cells and less hemoglobin than normal.

Thrombophilia

  • several conditions in which there is an increased tendency toward excessive clotting. Thrombophilia is the reverse of hemophilia. While people with hemophilia have an increased tendency to bleed, people with thrombophilia have an increased tendency to clot.

Titer

  • a measure of the concentration of antibodies, called inhibitors, in the blood.

V-W

von Willebrand Disease(vWD)

  • a bleeding disorder in which von Willebrand factor (vWF), a blood protein, is either deficient or defective.

X-Y-Z

Sources:

CIBD; Health Resources and Services Administration; National Heart, Lung and Blood Institute; National Hemophilia Foundation